Multiple sclerosis is My Living Hell

deprescribing

All posts tagged deprescribing by Multiple sclerosis is My Living Hell
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    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    We’re told to trust the system. “Medication reviews” are meant to make us safer, right? You sit in front of a GP or pharmacist who’s supposed to sort out the chemical soup you’ve been swallowing for years and voilà, fewer side effects, less confusion, more safety.

    Except… not so fast.

    A brand-new study from Exeter and Bristol Universities just blew a hole through that cosy narrative. Turns out, when they trialled an enhanced medication-review system GPs plus pharmacists, armed with special software it made absolutely no difference to safe prescribing. None. Zip. Nada.

    Over 1,700 patients, across 37 GP practices in England’s West Midlands and South-West, took part. The “enhanced” care looked great on paper: more collaboration, clever tools, all very NHS-approved. But the results? Safety didn’t improve at all compared to normal care.

    Before you chuck your pills in the bin, there was one positive: patients said it took less effort to manage their meds, and health professionals liked actually talking to each other for once. But the hard truth remains polypharmacy, the polite medical word for “too many bloody pills,” is still a minefield.

    More than 1 in 7 people in England now take five or more medications daily. For many of us with chronic illness, that number’s laughably low. Add one more tablet for your side-effects, another for your bowels, and one “just in case” and suddenly your breakfast looks like a chemist’s counter.

    So where’s it going wrong?

    It’s not the people most GPs and pharmacists genuinely care. It’s the system. Tick-box medicine. Software pretending to be empathy. Ten-minute appointments that can’t hold the complexity of a life lived with illness.

    The study’s authors were diplomatic: they said the NHS might need to “rethink” its policies on medication reviews. I’d say we need more than a rethink. We need a revolution in how chronic illness and medication are managed one where patients aren’t data points but participants.

    How to Survive the Medication Maze

    Here’s where you stop being a passive patient and start being the lead investigator in your own case file.

    1. Ask: “Why this drug and do I still need it?”

    Many prescriptions hang around long after their sell-by date. If you’re stable or no longer benefiting, ask whether it can be reviewed, reduced, or swapped.

    2. Bring the list. Every. Single. Time.

    Write down everything you take prescriptions, supplements, over-the-counter bits, even the “harmless” herbal stuff. Interactions hide in plain sight.

    3. Question the chain reactions.

    If you’re on a pill to fix the side-effects of another pill, it’s time for a deeper look. Sometimes the answer isn’t more medicine it’s different medicine.

    4. Demand plain English.

    If a doctor or pharmacist can’t explain what something does in a sentence you actually understand, they don’t fully understand it either. Push for clarity.

    5. Log how you feel.

    Keep a simple daily record: energy, pain, sleep, mood. Bring it to your review. Lived data is stronger than any spreadsheet.

    6. Know your right to a proper review.

    NHS policy says anyone on multiple meds should have regular medication reviews especially older adults or people with complex conditions. You can ask for one anytime.

    Because Safety Isn’t Just About Science

    Safety isn’t just about how many pills you take it’s about whether those pills are serving you.

    The science matters, yes. But so does your story, your side-effects, your sanity. The system measures numbers. You live the consequences.

    Maybe what we really need isn’t more software or “structured reviews.” Maybe it’s the kind of care that sees you as a human, not a walking prescription list.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

    @goblinbloggeruk - sick@mylivinghell.co.uk
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